The beach

I sometimes joke with our doctors (Maddie has way too many for a two year old) that I am just going to run away with her to an island and swear off doctors forever. This week though, we actually ran away to an island in order to see a doctor. Okay so we didn’t really run away, but we did make a decision on the fly to head down to Wilmington where Maddie’s neurologist sees patients once a month.

On Thursday, Brandon was set to take command of his new Company and I really wanted to be at the ceremony. So when we found out that Maddie’s Neuro was going to be in Wilmington Thursday and Friday, we asked my fabulous Uncle Haywood if we could stay at his house at the beach, and hopped in the car.

So instead of counting seizures at home in Charlotte, we have been down at the beach since Wednesday. The view in every direction is beautiful and Maddie is really starting to like the beach and the ocean. My mom came with us to help out and to enjoy this beautiful place.

The back view

The back view

On Thursday, we all went to see Brandon’s change of command ceremony. It was so nice to actually be able to be a part of something for his job. I used to be a pretty involved Marine Corps wife, but since the leukemia diagnosis I have not been able to at all. My mom helped wrangle Maddie at the ceremony so that she was not too much of a distraction. I just have to say how proud I am of my husband. I honestly do not know how he has done it over the last 19 months. His job is tough without the insanity that is our life right now. I have no idea how he has been able to balance the two, not to mention how he has driven over 40,000 miles in that time to commute to see us each weekend. Thank you so much honey!

For those non-North Carolinians, Wilmington is 1 hour south of Jacksonville, where the Camp Lejeune Marine Corps Base is. Brandon works there and soon we will actually have a home there. So getting to hang out at Figure 8, just north of Wilmington, means we can see the doctor, visit Brandon at Lejeune, and have Brandon come down and visit us over the weekend.

On Friday we saw Maddie’s Neurologist at the Wilmington clinic. It is always nice to see him face to face since we have been making med changes lately via phone and email. Many of us IS parents have noted an interesting phenomena about doctor visits. For some reason, after a visit to the Neuro, we usually have a renewed sense of hope. It is like the act of simply making a new plan each time gets our hopes up that this plan will be the one that gets our children seizure free. A little hope is always good, but I tried to be more realistic this time. So instead of having just one plan, we went ahead and planned the next four steps, so that as we fail things, we know where we are going next.

First plan of action (POA): Wean off Topamax, as it has done nothing except make Maddie more out of it, and reintroduce Keppra. We tried it before her IS diagnosis and may have had some control with it.

If this doesn’t help, POA 2: The dreaded ACTH, aka AdrenoCorticoTropic Hormone. A nasty steroid that I will have to inject daily into Maddie’s muscle. At her IS diagnosis, we did Prednisone instead because the response rates are similar, it is much easier to administer, and isn’t so ridiculously expensive that our insurance is going to want to fight us over it. We have to wait to make sure insurance will approve it to start, as the company that sells it requires approval before they send it out (to make sure they get paid). The company has jacked up the prices to over $25,000 per vial of this stuff, so we will go through about $150,000 of it even if it doesn’t work for Maddie. Many IS parents have written about this, if you want to be disturbed, click here or here.

The ACTH option is a pretty scary one because it was due to steroids and their immune suppression that Maddie ended up in the PICU in late March. We think we have the UTIs under control now, but we will be taking every precaution to keep her healthy if we have to go this route.

POA 3: This one is happening no matter what, but the timing of it depends on whether or not we try ACTH. We are planning a visit to Dr Chugani. He is kind of the IS guru, and is located in Detroit. He will do some additional testing and tell us whether or not Maddie could be a candidate for brain surgery. It is an incredibly scary option, but one which provides a cure for many kids. We are doing this not because we think she needs surgery, but rather to exhaust all our options. He is incredibly well known and all of the IS parents we know who have seen him rave about him. So we will get our appointment dates Monday and hope not to have to change them. ACTH interferes with the glucose FDG PET scan that we will get of her brain, so we cannot have done it within 4 weeks of our visit. So that is now officially in the works.

POA 4: Somewhere in the next few weeks to months we will try adding a vitamin called Carnitine to see if it helps at all. This is one thing her brain could be deficient in, so we will give it a try. Having a deficiency in certain vitamins and amino acids can cause Infantile Spasms, but that is rare, and finding the exact vitamin necessary to fix it is like looking for a needle in a haystack. This will be the third vitamin we have tried.

So we have a new plan (or plans) and we are just trying to enjoy the time here at the beach, especially until the hope that comes along with the new plan wears off.

A few photos:

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She finally said "Cheese!"

A special thanks to Haywood because we love it here. It is truly hard not to be happy here!

Love to everyone!

Liz, Brandon, and Maddie

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Playing Doctor

Sometimes I feel like after going through all this I deserve an honorary degree in childhood leukemia. I am even beginning to get really familiar with childhood neurology. These are not subjects I ever wanted to learn much of anything about, at least not through firsthand experience.

Maddie is still having tons of seizures a day (over 100 everyday!). We are at a point now where we have to decide if anything is working or if both seizure meds are complete failures and we should wean off them. And Maddie’s neurologist thinks I am most qualified to make that call. I agree with him that I know what is happening with her better than he could. But how can I know what is better or worse? Her seizures are definitely changing; they are occurring less in clusters and more in single spasms throughout the day. Is that better? I don’t know. To me it means there is no single minute if the day when I can feel safe that she won’t have one. But the clusters seem to wipe her out whereas she immediately recovers from the single spasms. So is this an improvement? When I watch my child have hundreds of seizures a day, it is hard to imagine that anything about it is better. This should not be my call……

Hopefully we will see the Neurologist later this week or next week and maybe he will be able to see something I can’t. But we probably need an EEG to be sure.

Infantile Spasms

I want to take the time to explain what is really happening to Maddie right now. Infantile Spasms sounds fairly mild as a seizure type, but it’s name in no way accurately describes the effect these seizures have on the brain. Maddie currently has over 100 seizures every day. She wakes up every hour all night, with a seizure at least every two hours during the night. She can no longer walk unassisted. It’s not that her walking is suffering; she has seizures that make her fall down. And they come with no warning, throwing her down to the ground hard. Our Neurologist suggested it is time we get her a helmet. I wanted to suggest it is time he figures out how to stop the &”?*%~# seizures. But we don’t seem to be any closer to stopping them; they have actually gotten worse over the last two weeks. Instead of a helmet, we bought “walking wings” which are used to help a child learn to walk. It has a big strap around her chest with two longer handles that I hold onto behind her. This way when she starts to fall we can catch her before she hits the ground. This is not ideal, but it is the only safe way to let her walk.

I am trying to come to terms with Maddie’s diagnosis and what it means for her future. I know I have said this before, but cancer was a much easier thing for me to accept. There are just two outcomes, survival or death. And I knew how long the treatment was. I guess there is really a third outcome I had not considered, survival – but with lifelong health problems caused by her cancer treatment. Of course, any way she survives is better than the alternative. I selfishly want my child with me no matter what. And I will do anything and everything I can to help her lead a happy and healthy life.

But to watch your child regress and lose skills she once had is the most difficult thing we have endured during this whole journey, other than watching her in extreme physical pain. She is as loving and cuddly and interactive with me as she has always been, but her behavior is less mature and independent than it was 6 months ago. Her speech has regressed as have her motor skills. And if we don’t stop these seizures soon, it may get worse than this.

We are just getting started with the Early Intervention stuff, and I am sure it will help us work on the things she needs help with. I am learning so much from other parents of Special Needs kids, especially those whose kids have had IS too. For awhile, I was in denial that our child would too be a “special needs” child. I just didn’t want that for our child. I know that no parent does. But that doesn’t change how much I am going to love my child. It just takes an adjustment in thinking about what I want for her in life. And I will never get rid of those lofty goals either, I just may need to concentrate a little more on much smaller milestones for right now.

I have added some links to other IS kids’ sites and to more info about IS. I still have hope that we will get the seizures under control at some point, but the damage being done by them every day is very real, and I don’t know what it will mean for her in the longterm.

So I guess this post is a little less positive than most of mine, but this is our reality right now. My days are spent counting seizures and praying for a few more minutes in between. And, oh yeah, we also need to make sure she stays cancer free.

To end on a good note though, I added some new pictures of Maddie from this month.

Happy Girl

Happy Girl

I actually was unsure whether or not to post pictures, because in them she looks so normal. But there is nothing normal about having over 100 seizures a day. But I could not not share just how beautiful she is!

Love to everyone,

Liz, Brandon, and Maddie

Good news!

I just wanted to share that we finally got the news that the flow cytometry was normal! That is where they put the marrow sample through a meter that is really sensitive to count all the various types of cells. And the result was that they are no longer thinking she is relapsing. We actually have already gotten the results of her MLL gene test (it usually takes over a week), and this was normal too.

So this is fabulous news! We have no idea what caused the cells to look so abnormal Monday morning. I am not going to worry about that, and we just hope it will not happen again. We have had bone marrow aspirations to rule out relapse before, but each time it was because her bone marrow was not producing much and we were not sure why. This is the first time we have actually seen possible leukemic cells in her blood and had to rule out relapse. I will say I genuinely hope and pray we never have to go through this again. It was a very difficult few days for us.

We are already back from the beach. Unfortunately Maddie’s seizures have been ridiculously out of control the last week or two. She was not sleeping well at the beach, so we decided to come on back to Charlotte in hopes that getting her back to a normal routine might help.
Thanks so much to my uncle for sharing his fabulous house with us. Even with seizures every hour, it felt a little more relaxing in that beautiful setting with gorgeous views of the ocean and the ICWW from every room. We did not really resolve the housing dilemma yet, but we hope to soon.
Next Monday, we see the oncologist and draw blood counts again. Then on Thursday Maddie has her first session of “play therapy” with a therapist from Early Intervention. We are excited to see what she thinks of it. Then later Thursday afternoon, Maddie will go to see the Neuro-Opthalmologist to see what is going on with her eyes. We are not suspecting that she has trouble seeing, but she has some unusual things going on with her eyes that we want to stay on top of.

Thanks for checking in on us and for continuing to pray for our little girl.

Love to everyone,
Liz, Brandon, and Maddie

Maddie went in around 9 this morning for her BMA and LP procedures to determine if she had relapsed. After being added to the OR schedule last night we were fortunate to get into pre-op quickly and into the procedure room by 10. The preliminary results of her bone marrow and spinal fluid showed no explicit signs of relapse under the microscope, but it will be 24-48 hours before the flow cytometry results are back from the laboratory. The initial impressions are positive, but we have to wait for the lab testing to be certain.

Rather than sitting around in Charlotte waiting and stressing, we decided to head down to Wilmington this evening and wait it out at the beach. Her seizures have continued to be strong, continuous, and effect her ability to walk without falling. Although that has been our primary focus the last few months, this recent blood test has reminded us how many serious fights Maddie has going on right now. Please keep her in your prayers.

Love,
Liz, Maddie, & Brandon

Seriously?

Sometimes we honestly just feel like all of this is just some unbelievably cruel joke. This afternoon we were due to leave for the beach, to relax for a few days at Figure 8 at my uncle’s house (thanks so much Haywood!), and to try to find a place to live in Jacksonville. It was our first real attempt to get back to a more normal life.

Of course, before leaving we had to check Maddie’s counts. This was our first time getting her blood via a finger stick after removing her port Friday and it was not great. But we left the clinic to pack the car and to wait to get her counts faxed to us. So when we finally heard the counts, the doctor let us know that some of the cells he saw on the slide were “possible blasts”. He said there were definitely some abnormally formed lymphocytes and that it was hard to tell, some of them may be blasts. Blasts are what we would see if she was relapsing. There are times where we have seen blasts because she was experiencing a strong recovery, but being that we have just restarted chemo, she should be doing the opposite of recovering.

So this is potentially very bad news. We will now be doing a bone marrow aspirate tomorrow and hope to have a preliminary result by late in the day.

Please pray that the leukemia is not back in our precious child’s body.

Love to everyone,
Liz, Brandon, and Maddie

More excitement

Someday soon I hope to type the words “Boring week here. Nothing much to report.” Unfortunately for our precious little girl, issues just keep cropping up.

Last Monday, Maddie had surgery to replace her port. The surgery went well and the recovery seemed pretty normal. She also restarted her oral chemotherapy that night. We were happy to feel like we were finally trying to keep the leukemia away again. But by Tuesday evening, her seizures seemed to be getting worse. This made us fear that the chemo could be causing it. There was also
a possibility that it was an effect of the anesthesia the day before, as sedation can sometimes lower the seizure threshold. We decided to give the chemo another day or two and see if the seizure activity returned to the previous level. But it did not, so we stopped it for a few days to see if that would cause them to return to previous levels. So far, that has not worked either, so we are left not really knowing what may have caused the change in frequency.

This Monday we entered the clinic full of optimism, knowing that Maddie’s new port would work beautifully. Instead, we found ourselves in the same old situation as with the old port…..no blood return. I was so disappointed (and frankly, angry) that we just left the clinic once we had tried all the standard tricks to try to get it to work. We decided we would return today in hopes that it was just a fluke. Maddie needed to have blood counts drawn and she was already a week overdue to get her monthly IV antibiotic. She also needed to have blood chemistries drawn because we needed to check her Potassium level again. So that meant without the port, she would have to have blood drawn through a needle; they cannot get what they need with a finger stick. Maddie was really upset after having had alot of action around her new incision at her port site Monday, and I was just too over our day to make her go through anything further.

So we were due to return to the clinic this afternoon. But this morning in the bath, I noticed a strange bulge just above where the new port had been inserted. Much to my dismay, I could actually feel the port’s catheter line pushing outward against her skin on her breast near her armpit. It is not something we ever saw with the last port, and I knew it had changed since her bath last night. So we called the clinic and Kelly had us come on in then. She set it up so that we immediately got a chest x-ray and met with the surgeon’s nurse to see what she thought. The x-ray showed that the catheter which leads into the right chamber of Maddie’s heart had already shifted considerably since its insertion 8 days ago. But it was still in the heart, though not really a place where it would work reliably. So the surgeon’s nurse felt we should access it (insert a needle) and see if it worked and then decide what to do about it. So we headed back up to the chemo clinic where Kelly accessed her. Again, no blood return. Right about that time, Maddie’s oncologist walked in, took a look at the x-ray today compared to where it was when inserted last week, looked at Maddie’s chest to see where the catheter was bulging under the skin, and said, “this port is going to have to come out.” So Maddie has to have another surgery to remove this port.

We have decided to try something crazy and see if Maddie can tolerate blood draws without a port. Maddie still does not understand why we have to stick her either in her port or a vein, but the port can be more painless and is usually more reliable. Sadly, that has not been the case for us lately, and we are going to try it for a month and see how she does with finger sticks 3 weeks out of four and hopefully just one needle poke per month. Of course, if anything weird comes up (which seems like weekly if not daily for us) we would have to start an IV, which is really torturous for her, or we might just have to get another port.

This is certainly not the way we hoped this week would go. But there is a possible upside. Brandon graduates from his school in Quantico this week and actually already had the whole house packed up and moved out on a truck yesterday. As soon as our housing is ready, he will be moving back to Jacksonville NC. Because he will likely deploy this fall, Maddie and I really would like to live with him before he has to leave. It would be a little easier to spend more time in Jacksonville if we can get her used to peripheral blood draws, as there is no one at the hospital in Jacksonville or Wilmington who could access her port for blood draws. Also, the port means a trip to the ER every time she has a fever because of the risk of infection. We really don’t love the idea of having her treated in an ER at a hospital that does not have pediatric oncology patients. We are just used to people who know how to handle cancer and ports, and it is scary to think of going elsewhere. So if we find that she can get by without a port it may make it easier for us to actually live together in Jacksonville.

On another subject, her seizures are no better, and we have just started Topamax along with the other seizure med, Vigabatrin, in hopes that we get some relief from seizures. We met with Early Intervention last week and it was pretty eye opening to actually take stock of all of the skills she has lost since the onset of her epilepsy. She is at least a little behind in everything, but she has alot of work to do to catch up in both fine and gross motor skills. We fear that she will not be able to improve much until we can get rid of the seizures.

So please keep her in your prayers. She really needs a break, and it just seems like it has to be coming sometime soon. She is the most lovable, cuddly, sweet, amazing child I have ever met and this is just not fair that she has to go through all this. As we approach this Mother’s Day, I am the proudest mama ever. But I just wish for something to be easy for her.

Happy Mother’s Day to all the moms out there. Please take a moment to feel truly blessed if you have healthy children. There is nothing better in the world. I wouldn’t trade my amazing child for anything but I would give everything to be able to heal her.

Love to everyone,
Liz, Brandon, and Maddie